The first 28 years of my life
I was born in Albury, NSW in 1973. I am the only girl in our family of 4
children. Having three brothers has helped me to grow into the active,
determined and independent young person I am today. From age 12 onwards,
my mum raised us 4 kids as a single parent and gave us children freedom,
inspiration and direction to do what we chose in our lives, which I’m
sure has led to our success and given us the strength to manage life’s
ups and downs.
I left my hometown of Albury at age 20 with my best friend, to explore
the other side of Australia and then the world. I have backpacked
through Europe and have been on surf safaris in Indonesia. I’ve enjoyed
a lifestyle that many would envy, living in such beautiful places as
Rottnest Island in WA and the hinterland of Byron Bay. While living on
Rottnest Island, I worked in a surf shop and learnt to surf. Also there,
I developed a deep passion for landscape photography. While living in
Byron Bay for 3 years, I co-owned a digital surf photography business
and was also working in a surf shop the day when I was diagnosed with
leukaemia, which was Australia Day 2002.
Being diagnosed with leukaemia
I was at work this day when I noticed lots of small dots on my legs that
I’d had for a few days were getting worse. Apart from these funny
looking dots I was feeling completely normal. Thinking that I had some
strange rash, I went to the doctor in my lunch break only to be told in
a 10-minute consultation without a blood test that he thought I might
have leukaemia! Within these ten minutes, this doctor had felt my
stomach and asked if I had been feeling full? I replied… “yes, when I
was lying down on my surf board I’d had a funny bloated feeling in my
stomach.” He then looked at my legs and also asked how long the pimples
I had on my face not healed? I replied… “a couple of weeks.” After this
brief examination and questioning, on my way out of his room he handed
me a slip and asked if I could go and have a blood test taken at the
local pathology. So with tears streaming down my face, I went to the
reception and paid my $60 bill.
I walked slowly back to work to tell my boss in a state of shock and
disbelief. He recommended I go to his doctor get a second opinion
straight away. As I was walking to this next appointment, I was staring
at the people in the street eating lunch and enjoying themselves. In my
head all I could think was… “why is this happening to me and not any of
these people?” The second doctor examined the dots on my legs and then
told me he thought it would be highly unlikely for me to have leukaemia,
however he did organise a series of blood tests. I had these done and
went back to work for the afternoon. I finished work around 6pm and went
straight home and told my flat mate what a strange day I had. Nothing
else was said of it and life went on normal again until the phone rang
at 9pm that night. It was the second doctor saying “sorry but the first
doctor was right in his diagnosis.” He proceeded to tell me I had
leukaemia and asked if I had any family members living with me. I said…
“no, they live in Albury.”
At this point I went into shock and then started to feel weak. My
flatmate came running to my side as she could hear the conversation and
my cries for help. The doctor calmly asked if there was someone with me
at my home and I replied… “Yes”. He then went on to tell me that I
needed to pack my bags to go to the Lismore Base Hospital early the next
day. My flatmate helped me contact my family in Albury and give them the
shocking news. I rang my boss and told him I would not be coming to work
for a while. One of my work colleagues said she would come and pick me
up in the morning to drive me to the hospital.
I woke up in a bad state at 6am the next day after a feverish night’s
sleep. When I got up went to go the bathroom to brush my teeth, I
noticed I that I had blood in my mouth. Trying to take in what was
happening I went for a walk to the beach with my dog. As I was walking
along, my hips began to feel disjointed and uncomfortable, but I
persevered as I really wanted to see the ocean, so I could feel its
soothing calmness.
By 10am that morning, the trip had been made to Lismore Hospital. I was
directed to the plastering room (of all places!) and examine briefly by
a doctor. This doc told me that it looked like I had an acute form of
leukaemia and I would need further tests done at a bigger hospital. He
walked out and I was left alone for over an hour. It was the Australia
Day public holiday and there was not a lot of staff or people around. I
was feeling alone and scared, so I took myself outside and sat down on a
bench seat to get some fresh air. My friend was in her car driving to
the Ballina airport to pick up my mother and youngest brother who flew
in from Albury to be with me. It was around 12 noon when they had
arrived and saw me sitting on the bench seat outside the hospital. After
many tears my mum went in to see what was happening. She was given the
run around and told that the doctor I was seeing was taking the rest of
the day off and going home. Mum demanded to see him, so he came outside
and told her that I would need to get myself to a major city hospital
for treatment. Mum was handed a phone book and told to ring the
hospitals in Brisbane or Sydney and then drive or book a flight and get
myself there. He then said goodbye and left.
My mum rang Brisbane Hospital only to be told they did not have a place
to take an interstate person, as I lived in NSW. We decided that Sydney
was too far away from mums’ home town of Albury and Melbourne would be
better. So she rang the Royal Melbourne Hospital and we were welcomed
immediately, with a report that a 17 year old male had been diagnosed
with the same type of acute leukaemia as me three days ago. Mum set
about and got some flights booked with Qantas. By now it was around 3pm
and I was tired and aching all over. I was getting massive red bruises
appearing all over my body. My mum went into the hospital and asked that
a doctor come and see me. Another hour went by and no doctor came. The
pain was getting extreme and so mum rang the RMH and spoke to a doctor
there. The doctor was horrified at the suggestion that I fly on a
commercial flight and said that my brain would hemorrhage flying at such
high altitudes. He demanded I not get on that flight and said he would
sort things out for us. Within 10 minutes a new doctor came out to see
me and I was taken finally into the Lismore Hospital and admitted as a
patient. I had to receive a blood transfusion straight away and
platelets were also flown in from Sydney over night.
The following morning I underwent another blood transfusion before being
airlifted by the Royal Flying Doctor Service to the Royal Melbourne
Hospital. Within a couple of hours of arriving at the RMH, I was
diagnosed with Pre B cell - acute lymphoblastic leukaemia. Over the next
few days further tests were done, which determined the benchmark
prognosis through identifying chromosomal translocations. These results
showed that I was only 1 of 10 others in the world with this sub-type of
leukaemia. Unfortunately as I also had an extremely high white cell
count (more than 90% blasts cells) in my blood; my initial prognosis was
very poor. The doctors said I would have a 5% chance of surviving this
disease. I straightaway thought…“five people out of one hundred do
survive, and I will be one of them!” They put my onto a 54-week protocol
of chemotherapy.
Life as a cancer patient
From my first day at RMH to the last, I remained positive. I am not sure
why, I just seemed to have this automatic coping mechanism take control
over me. There were times that I was extremely scared of losing a life
that I once had, however I found the hardest part for me was seeing my
family getting upset, because I was sick. I had to try and combat a huge
fear of needles. I also attribute my inner strength to deal with my
situation to my family support system. There was not a single day that I
spent in hospital that my mum, along with my brothers, was not with me.
I was an active patient on ward, spending the days I was well enough
visiting other patients and talking about our similar experiences. Some
days I would get on the exercise bike out in the corridor and ride 20km.
I would go up and down the flights of stairs in the hospital to try and
pump up my veins so that my needle would go in the first time for the
doctors. I would give my doctors such a hard time when they told me I
would never be able to see my chocolate brown Kelpie - Jackie Brown
again! Actually I gave my doctors a hard time, joking about lots of
stuff, especially when they would give me my results and I would ask
them silly questions like... "why can't you make the hair on my legs and
under my arms fall out and leave the hair on my head instead"?
By December 2003 I became extremely ill from the side effects of the
chemo. I contracted a rare fungus in my blood system and all treatment
was stopped. They reported to my family that if I did not respond to the
anti-fungal medication I would die within a week (I did not know this).
At this time I was experiencing excruciating headaches from fungal
meningitis and was placed on massive doses of morphine. On Christmas day
my family with the help of the nursing staff, brought my dog - Jackie
Brown in to see me with a set of reindeer antlers on her head. Early in
2003, I had a lumbar shunt inserted to relieve the swelling in my head,
which unfortunately lead to nerve damage in my legs and an infection in
my spinal column, which then also gave me bacterial meningitis. In May
2003, the shunt was removed and I was fortunate that my headaches
disappeared and I was discharged for the final time as an inpatient at
RMH. My family and I packed up our belongings in Melbourne and moved
back to my old hometown of Albury.
Living a life after a cancer diagnosis
The time that I spent in the hospital was life-changing. I came from a
family who had no history of illness. Before I became ill, I was very
naive to the fact that so many people had to live a life with
debilitating illness or injury. All of a sudden I was thrown into this
world not knowing if I would ever have a normal life again. One of the
hardest adjustments I had to make was actually learning to do nothing
after leading such an active and young life. It was extremely hard for
me to lie in a hospital bed and think of how my friends are just
continuing with their lives on the outside.
Unfortunately I saw that some patients in hospital had no one to care
for them, and they simply did not survive. I was lucky; I had someone
from my family at my bedside every single day I was in hospital. I truly
believe my family’s support and love helped me to remain strong and gave
me the will to live. Probably one of the hardest parts of living in
hospital was meeting the patients who became my dear friends and did not
survive. I now live life with a level of guilt of why did I survive and
they did not? Another great difficulty was feeling alone because often I
was surrounded by older patients who I just could not relate too. Many
were way, way old, nearing the end of a long and productive life, and
willing to die. Me on the other hand… I very much wanted to live my life
and felt so ripped off and that it was unfair that I may not have the
chance to do so. Even if I did, it appeared to me at the time that I was
not going to be living the exciting life I once had. These are driving
forces behind me wanting advocate and to do something with a relatively
normal life I am fortunate to have after cancer.
Because my treatment was 1 and a half years in RMH and another 1 and a
half years recovering from the treatment, I was absent from mainstream
society for nearly 3 years. Slowly I learnt to take negatives situations
in life and produce or turn them into positives. I came out of my
illness with a new view to life. During my illness I questioned things
like: we all work way too much – life is not about work; life is about
family, relationships, love; we all need to slow down and enjoy what’s
around us as it doesn’t last; life is limited so why not make the most
of it. But my newfound views on life, I was soon to discover, were in
opposition to the world outside. It was hard to fit back into the
outside world, as society just seemed so fast-paced and on a different
wave-length to me. Everything in those 3 years in the outside world just
seemed to speed up. Real-estate prices went skyrocketing. 50km and 40km
driving zones were introduced in this time. Men started dressing better
than women, doing their hair and wearing pink! It was all a bit of a
culture shock to begin.
I soon realised that as I physically recovered my emotions were catching
up with me. I came crashing down in a heap, I became angry and I often
lashed out at those I loved. I was worried that my emotional stability –
or lack of it, was going to cause my cancer to come back. I knew I
needed professional help to deal with these emotions, but I searched and
searched and could not find anything. Yes there were support groups, but
once again I got the feeling of being alone by going to them, as the
majority of participants in those groups were either way too old or had
breast cancer and I just felt left out.
Ever since my diagnosis, I have been on a constant and perpetual hunt
for support services for someone of my age who has had cancer. I keep
finding all these services out there for younger people (kids, teens)
and older adults. I can see great cancer support organisations
specifically for young adults up the age of 40 years operating overseas.
I have been continually questioning myself as to why we can’t have
similar organisations here in Australia. I have now taken some actions
in answering this question. And this is why I have provided my story for
The Warwick Foundation, as this organisation, like me, is trying to do
something positive for young adults. Thank you Sam.
Read other personal experiences from young people with cancer:
Natalie's Story
Andrew's Story
Jenna's Story
Kylie's Story
Bec's Story
Darren's Story
Lily's Story
Georgia's Story
Kylie's Story
